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Learn About NETs and monthly meetings

Neuroendocrine Tumors (NETs) | Last Active: Oct 31 7:30pm | Replies (96)
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@mfgw

My first carcinoid was diagnosed in 2016. However, my first growth was removed in 1994, then again in 2008. I had 4 NETS removed this year, and another stage 2 taking up residence in my duodenum. There is the potential there is still something hiding in my stomach. Those contrasts like to show and tell. My 2 Chromogranin A's have been 4388, and the last taken was last week and it was 5525.

So the thought that I have NETs are scary. The cancer that keeps on giving.

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Replies to "My first carcinoid was diagnosed in 2016. However, my first growth was removed in 1994, then..."
Teresa, Volunteer Mentor | @hopeful33250 | Dec 8, 2021

I am sorry to hear of your history of NETs, @mfgw. You mentioned you are starting Octreotide. Are these injections to control carcinoid syndrome?

I have had a history of carcinoids as well. They have all been in the duodenum bulb. My surgeries were in 2003, 2005, and again in 2016. I understand what you mean when you say it is scary.

Have you had the Gallium Pet Scan?

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